Emily's sister, Casey

This one is a tough one to write.  It is prompted by an experience Casey and I had on the beach just a few days ago in Hilton Head.  I try very hard not to make the focus of our lives, much less this blog, about Emily.  But the fact of the matter is she brings experiences and reflection to our lives we would have likely never considered without her special diagnosis.  I will live these experiences as a woman and a mother, but never a sister.  That one's all on Casey.  And a day does not go by that I don't pray that she is spared any resentfulness towards having a non-typical sister.  Casey is an amazing big sister to Emily and I believe in my heart 1000% that God gave Emily Casey for reasons so obvious to me and everyone else that you really cannot not believe God hand picked these 2 girls to be together.

 

Their journey together started when Casey was 3 and Emily was a newborn.  Then they were 5 and 2.  Now they are 8 and 5 and life is as it's supposed to be.  And one day they will be 38 and 35.  And life will look a lot differently.  It's easy to see them as children and maybe even older children.  It is not easy for me to always look ahead to adulthood.  Especially seeing Emily as an adult.  I hadn't considered Casey has NEVER thought of Emily as an adult.  Here's how I know:

Sitting in the sand one day watching Casey play in the waves, I saw an elderly couple walking with a man who had Down syndrome.  I assumed from watching the way the older man held the younger man's hand that they were mother, father and adult son.  They made their way towards the water and appeared to be just enjoying the vastness of the ocean before them as they stood letting the water lap over their ankles.  I noticed they had Casey's attention as well as she stopped splashing about and just looked at them.  She finally made her way to me, sat down in the sand next to me and informed me that man has Down syndrome.  I realized quickly that this was the first time Casey may be seeing an adult with Down syndrome, as most of our discussions about disabilities are of kids she sees at school or at Childrens' hospital when we are there.  And suddenly, with tears in her eyes, she told me, "I don't want Emily to be like that when she grows up, mom."  And I froze.  Dear God, I had nothing.  Talk about dropping the ball in the life lessons department, mom!  I think I ended up saying something to the effect of we all know God makes each person different.  But that's another conversation entirely.  And then she was off again to play in the sand without any words of consolation or affirmation that all will be okay from her mom.

A moment, an opportunity to give peace to my oldest daughter, passed.  I failed.  Because I was thinking the same thing.  I don't want Emily to be like that (dependent on her parents) when she grows up either.  Of course, later after I dried my eyes, I thought of all the things that I should have said like both she and Emily can grow up to be whoever they want to be and do whatever they want to do if they work hard and all that.  The mommy guilt was crashing over me like the waves of the ocean my toes were in.  (Okay, the waves don't crash all that hard in Hilton Head, so I'm totally being way too dramatic for poetic purposes, but it kind of works to make my point :)

I haven't broached the subject again with Casey yet, but I will soon.  The moment will be right and we'll discuss how the future is unknown for all of us, but it will be full of opportunity for both she and Emily.  I'll explain how people with disabilities are treated and educated better than they were in the past and that will only continue to improve.  We'll make sure of it.  And I'll tell her how mommy and daddy will be there to help both she and Emily with whatever they need no matter how old they are.  She will, once again, be told that she can ask us anything or tell us anytime what she is feeling.  And hopefully I'll be prepared with some comfort and advice for a sister who is growing up with some unique experiences. 

 

Recently one evening we had to explain to Casey that the reason why Emily was so sad and crying was because kids didn't want to play with her and Emily didn't understand why because when Emily asked they just walked away from her.  Casey went to Emily and hugged her and then out of the blue (kind of angrily) told Tom and I she thought we should stop taking Emily to speech and occupational therapies because all they were doing there was trying to change Emily.  And she thinks Emily is perfect just the way she is and doesn't need to be changed. 

Yeah, I think Casey is going to be a great sister to Emily.  Even at, or maybe even especially, at 38 and 35.